Autism Cure? It's About Functioning Not Conformity

One of the blog posts on this site received a number of visits from the Mother of Shrek Site, where Casdok, the author, and mother of a non verbal autistic young man articulated her views on autism acceptance in the context of what she described as a hypothetical autism cure.

In the course of that commentary Caskok asked what is meant by curing autism but she asked the question using the language of the Neurodiversity ideology to which she subscribes, which views autism not as a medical disorder but simply as a "difference". I posted a comment on that site although I don't know, as I  post this comment, whether it will pass moderation so I have reproduced it below in italics following the question asked by the author which I have also posted and  highlighted in blue.

The wording of the question posed by the site's author obviously provides its own answer. The concept of cure as providing the person cured with the ability to understand the world, to communicate better in the world, to function and even function independently in the world is not part of the question as framed by the Neurodiversity embracing Casdok.

Cure is not defined by Casdok in the medical sense of curing the disorder in question, of helping an autistic child or adult overcome the serious cognitive, behavioral and communication deficits that restrict the lives of so many with autistic disorder.  Instead Casdok, consistent with Neurodiversity ideology, asks the question from the perspective of  a social model of disability, as conformity to societal norms:

"""" So what do we really mean by cure? To make someone conform? To be socially acceptable? Assimilated into the collective?! Why can’t society accept everyone is different?"

You have just provided your definition of cure by rhetorical questions framed in the language of those who do not view autism disorders as disorders.

I don't know why you obtained an autism disorder diagnosis for your child. We sought medical attention for our son without knowing anything about autism at that time. We sought attention because he wasn't developing any communication or other functioning skills anywhere near the level of his older brother or any other child we had known.

Cure? Cure would mean providing our son with the same, or similar, ability to understand, function in, even participate in the world that you and I take for granted. Are you, and those who agree with you in the comment section unaware of the autistic Nova Scotia boy who wandered off to be lost forever in a snow storm? Do none of you ever read of the other autistic persons who are lost in traffic or wander away as did Keith Kennedy to be lost in the woods for a week? Are none of you aware of issues of serious, even deadly self injury that affect the severely autistic?

I have been involved with autism advocacy in our home jurisdiction for a decade now. I have visited institutions where severely autistic persons live dependent on the care of others. I have helped some persons with Aspergers in the legal system. I have advocated with other parents, successfully, for pre-school government funded autism interventions and for accommodation of autistic students in our neighborhood schools.

Of course I want my son's disability to be accommodated and I have used  all my abilities to ensure that happens for him and others where I live. But he, and many others with Autistic Disorder, will live their lives within a facility dependent on others with limited understanding of the world.

All cures are hypothetical, until sufficient research is done to find one.

If I could snap my fingers and cure my son, resulting in him having the ability to understand the world more fully, to communicate more fully, to function and survive independently would I do that?

You're darn right I would."

I am not sure how a mother of a non verbal autistic adult comes to subscribe to the social model of disability,  I wish her son well but I hope, for the many parents who continue to try and help their autistic children live the fullest, most rewarding lives possible, and especially for the children themselves, that the research to find cures for autism disorders continues.  If the day that cures, or even significantly beneficial treatments, are found that improve the lives of autistic children and adults then real choices can be made, even if  some would choose not to provide their autistic loved ones with the benefits of such treatments and cures.

Curing autism is not about conformity. It is about giving people disabled by  autism disorders the ability to function more fully and independently in the real world. It is about giving them the same opportunities to experience life that the rest of us, the alleged Neurotypicals, enjoy.

For this parent curing autism is about helping our autistic children enjoy life to the fullest. 

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Absurd Social Models of Autism Ignore Severe Autism Realities

Restigouche Regional Hospital, Campbellton New Brunswick

Centracare Long Term Mental Health Services Center, Saint John New Brunswick

As the father of a severely autistic boy I am repulsed by attempts to redefine autism from being a medical concept, a neurological disorder to a social model based on variations in personality and modes of thinking. At its most benign the social models of autism are inherently self contradictory. People who have received a medical diagnosis of autism wish to be thought of as autistic, they are proud of their autism, BUT they do not want "their" autism to be known as a medical condition. Autism, however, has no meaning other than as a medical disorder. A person acquires the label autistic because they have received a medical diagnosis. They received the diagnosis because of significant behavioral, communication and social deficits. At its worst though the social model of autism is a dangerous delusion.

The social model is dangerous because it requires that we close our eyes to the realities of autism, particularly the more severe manifestations of autism. There are many persons with high functioning autism and Aspergers for whom it is fine to ponder autism as a social construct. After all many can attend university, have careers, get married and otherwise function independently in society.

For many low functioning persons with autistic disorder life is quite different. For them the future is one of dependent living in group homes and institutional facilities. For some lower functioning autistic persons language is a severe deficit. Not just speech but understanding or using language by any mode. For some, intellectual deficits accompany their autistic disorder.

Here in New Brunswick I have been involved with autism advocacy since my son's diagnosis 11 years ago. With many other parents, I fought for pre-school autism intervention and autism trained teacher aides for autistic students. These resources have been helpful for many New Brunswick children with autism disorders including some with Aspergers. These special resources were dedicated to helping these children because they needed the extra resources, the specialized intervention. They needed these interventions because of the deficits which defined their medical disorders, their autism spectrum disorders.

I have also fought alongside other parents for the continuation of a tertiary care program for autistic children which had been threatened with termination. The plan to close the program arose not because it was unnecessary, quite the opposite. The autism pediatric tertiary care program was being closed because it was placing such demands on the resources of the facility which provided the program that it was threatening other programs. The announced closing prompted a strong reaction from parents of autistic children. The program, with the involvement of the facility's professional staff, and then Health Minister Brad Green, was saved.

I have also visited two mental health facilities where some autistic adults in New Brunswick live. New Brunswick has a privately operated group home system badly in need of many improvements. For some autistic adults though even a group home is not the reality. Some are too severely autistic, present too many complex challenges, to live in a group home. For some institutional care is the future.

I visited the Centracare facility in Saint John several years ago with a friend, a father whose adult autistic son was living in the facility. At the time my son Conor was only a child. Last week I visited the psychiatric building of the Restigouche Regional Hospital in Campbellton. I was particularly interested in the treatment of the autistic adults living there. The people from the hospital were competent and caring individuals. They do what they can for all their residents including the autistic adults. For me it was reassuring to meet such people but it was still disturbing to see what may be my son's future.

Conor is older now, he will turn 13 this Thursday. His future is much closer. His future may well mean life in a group home, or in an institution like Centrcare or the Restigouche Regional Hospital. For me it is impossible to cling to the outrageous idea that autism is not a medical condition. Reality is far too close at hand for such a dangerous delusion.

autism